Crystal Lake family highlights rare condition

Caption

(Josh Peckler – jpeckler@shawmedia.com)

Nick Romita, 18, of Crystal Lake goes over homework Wednesday with his mother Denise Birt-Romita inside his home in Crystal Lake. Romita has a extremely rare blood disease called Diamond Blackfan Anemia that does not allow it's victims (mostly children) to produce their own red-blood cells. This results in the patients becoming steroid and/or transfusion dependent for the duration of their lives. In the past year, at least 20 have died from this disorder, and there are only a few hundred that have been diagnosed since the disease was first discovered in 1938.

CRYSTAL LAKE – Nick Romita has spent his life watching from the sidelines – just as he does for every Prairie Ridge High School football game, including last year when he traveled to Champaign to watch the Wolves win a state title.

The 18-year-old’s bones are brittle, which makes sports, or even physical education classes, difficult. Asthma keeps him from many activities, including riding a bike.

Romita has an extremely rare bone marrow failure syndrome called Diamond Blackfan Anemia or DBA. DBA is known to afflict only a few hundred people nationally.

Romita was 12 weeks old when he was diagnosed. He was acting “strange,” his mother said, not feeding. He was pale and his chest was heaving as he struggled to breathe. He was in congestive heart failure.

Within 24 hours, his and his family’s lives were changed forever when they got the diagnosis.

“It was my worst nightmare,” said his mother, Denise Birt-Romita.

Like Romita, most DBA patients endure a lifetime of medical tests, procedures and hospitalizations. Treatment can lead to other medical problems, such as cancers, kidney problems and diabetes.

Growing up, Romita – now a senior at Prairie Ridge – had been the target of bullies. Students didn’t understand that the prednisone pills he took stunted his growth. Classmates couldn’t grasp why he got special treatment in certain activities, why he couldn’t participate in field trips or why he frequently missed school.

“[DBA] held me back from certain activities, like gym class at school,” Romita said. “I’m stronger in dealing with it, and I understand what I need to do to deal with it.”

Even seemingly harmless horseplay has sent Romita to the hospital. A classmate pulled a chair out from underneath him, and Romita was left with a chipped tailbone, a sprained ankle and six weeks of physical therapy. A flu virus can send him to an emergency room.

But through it all, Romita kept a tight-knit group of friends who like driving around Crystal Lake and playing video games. Romita is a member of the Young Eagles flying club at Lake in the Hills Airport and wants to be a pilot someday.

And things are turning around. Not only are his treatments far less frequent, in his junior year his classmates voted him Homecoming Prince.

There is no cure for DBA and money for research is limited. Because of the rarity of the disorder, families have raised most of the funds themselves.

“As with anything, I think first of all, not a lot of public is aware of DBA, and it’s not getting funding for research for some very special people afflicted with this,” Birt-Romita said.

The DBA Foundation, a nonprofit organization that supports Diamond Blackfan Anemia patients and families, is competing with charities nationwide for grants ranging from $10,000 to $250,000. The top 196 charities will receive grant money from the Chase Community Giving program. Voting is open through Sept. 19.

“It is understandably difficult for anyone to imagine what it is like to live with a disorder as rare as Diamond Blackfan Anemia,” DBA Foundation Executive Director Dawn Baumgardner said in an email. “In addition to the fears, uncertainty and the frustration of finding appropriate medical care, there is a feeling of isolation and that no one just gets it.”

Added Birt-Romita: “We’re a small but mighty community getting the word out there that we exist and we need help.”

How to help

To vote for the Diamond Blackfan Anemia Foundation through Chase Community Giving, visit the Facebook page at http://shawurl.com/cij